Tag: tsw

I read somewhere that hives and sweating were signs of recovering from topical steroid withdrawal. As I am finding myself developing hives on occasion and able to sweat more normally again, I sorely hope that that is the case and that this particular journey with eczema will soon be over.

But what does that even mean anymore? So much of my life has now been formed by eczema and going through topical steroid withdrawal that I can’t remember life without them as constant companions.

I dropped out of my clinical graduate program to avoid physical contact and other triggers to my skin, and instead went more towards the research-based side of academia, which derailed my initial streamlined plans.

I have seen all hours of the night as my skin raged: the itches of eczema and the topical steroid withdrawal heat flares and weeping skin. As a result I have learned to be flexible and take a good day at face value, to reflect.

I reconnected with and got married to a man more understanding about my skin and its flares than I thought capable which led to confidence about speaking up about my condition. And then had our magnificent little baby, which subsequently created an even more difficult paradigm for myself if the ambition was to return to the initial 9-5 job plans but caused me to find new passion (the postpartum period, library advocacy) and reignite old ones (writing, French, storytelling) which have started and continue to turn into new opportunities.

I poured hours and hours into self care and forgiveness and lifestyle alteration to be able to manage my condition and as a result became a calmer, happier person, though I also amassed a collection of products (and a product graveyard in my cabinets) and wasted money.

I developed a deep distrust for dermatologists and their lack of advice on the role of sustainable practices (such as nutrition/diet) and their quick fix mentalities. All I crave are conversations towards investigating correlations, and talking shop about safest management practices for the longterm.

I have learned the power of an anecdote, and how many kindhearted souls have advice to spare, showing the breadth of ways this condition is handled, but also that people care and want to help if they can. There still exists community.

Honestly, I’m not even sure what my identity would be if I am no longer plagued by this disease; it’s so much a part of me now it’s almost like having a second shadow lingering from constantly well-placed lighting.

And as a result I’ve developed into a completely different person these last 5 years, almost unrecognizable in demeanor and attitude from that healthy-skinned 22-year old.

I’ve had to learn to do things all over like figuring out how to exercise in ways that don’t trigger a flare, or how to manage symptoms when they are triggered by a social encounter, stress, or the weather. How to be okay with a body that is less than ideal and not as healthy as it was in the past.

Though I’ve had to give up a lot, I’ve grown from it and become a stronger, more introspective person who has had to work less hard to find others’ hidden untold stories. I’ve learned to be brave in my exposure, to hold my head up even when suffering, but also to acknowledge my own limits. I’ve learned to ask for help, and to accept it.

Who I am today is inexplicably linked to my experiences and in the last five years; I have been stained by this disease, this condition that requires so much sacrifice and change, but also so much empathy and strength.

As I stand back and reflect, I note that a quarter of my quarter of life has been influenced by eczema/TSW. A huge intractable part of me has worked to understand and accept this reality, and I will continue to do so, and see what happens next: what else I’ll learn and how else I’ll change.

Over the years I have gotten so much advice from well wishers about how to cure my eczema/topical steroid withdrawal (because in my case, the condition that changed my life was TSW, which was caused by the treatment of eczema). While some of the suggestions may be useful, more often than not they aren’t, and it may not be because the advice is something I’ve already tried or something outlandish. It may be more so because advice about a single aspect in my life to change doesn’t do anything impactful, because eczema’s root cause can be anything but singular.

I know some people are lucky: they remove the allergen (mold, gluten, soy, eggs, nightshades, dairy, dust), they decrease their stress, they exercise more, they find a supplement that really works, and bam, no more eczema. Unfortunately, I am not one of those people.

My root cause seems to be tied to many different aspects, from overuse of topical steroids, to unresolved emotional issues after familial deaths, to increasing sensitivity to foods (on top of food allergies I was born with), to increasing discomfort with specific exercises and a sensitivity to heat and sweating, to insomnia and other sleep issues, etc. So being given a new product to try doesn’t really solve the other issues preventing me from quickly recovering from each flare.

What I do find interesting, is people that have learned to live with eczema (and/or topical steroid withdrawal) and the various lifestyle changes they have done to help keep their flares under control. I came across a post a while back called The Metaphysical Meaning of Eczema – Do People Get Under Your Skin, which I thought would just be talking about how my emotions cause my eczema, but I was pleasantly surprised to read the author’s inclusion of a whole host of other things she does in her life to help. Because yes, I am sensitive, both skin-wise and emotion-wise (I can now flare-up from heightened nervousness from public speaking, or due to misunderstanding over trivialities at the store) but, and I am indignant about this, my sensitivity didn’t cause my eczema, and it definitely didn’t cause my topical steroid withdrawal. It probably is the reason it takes me so long to heal (on top of the constant flow of changes in my life… e.g. getting married, moving 4 times, leaving my graduate program, buying a house, having a baby- all within the last 3 years). I have learned to be zen about skin-related sleep deprivation, about hives from foods I normally can consume, over having to adjust all forms of activity I enjoy, over forgiving myself for making “mistakes” that then provoked a flare, etc. I know I still have a ways to go to consistently help my emotions flow naturally and not build up stress, but I have made immense progress and my skin doesn’t always reflect that. Hence why I get up in arms when people try to reduce my condition down to me “just not doing x”.

Woof, okay so now that I’m done that rant, back to my initial idea around today’s topic. The point is, eczema can be a multifaceted b*tch of a condition, with varying twists and turns that dictate how it goes for different people. If you don’t believe me, try reading the experience of Daniel Boey in his book Behind Every Itch is a Back Story: The Struggles of Growing Up with Rash, or peruse any number of personal blogs out there these days about someone going through TSW.

My point is that while I am happy for people who find ways to rid themselves of eczema flares through a singular method, I find it frustrating when we see the gimmicks of “anyone can cure their eczema if they just do x!” and find it somewhat damaging to reduce all people with eczema into the same world because said singular solutions don’t work for everyone. I appreciate people that talk about the myriad of changes they have had to do, because it shows that the cause of eczema, as it is still unknown for the most part, requires different management for different people, hence why it is so hard to “solve”.

My skin is going through what I believe to be another topical steroid withdrawal. My reasoning? I have excessive wrinkling on the extensor surfaces of my skin (I call this stage of skin my “elephant” phase, and I’m not alone; see the study here), and I was on a moderately potent steroid ointment for most of my body and a lower potent one for my face/crooks of elbows and knees when I found out I was pregnant. What finding out I was pregnant meant for my skin was that, because the more potent one was not necessarily safe for a growing baby, I was taken off of it earlier than planned and told to use just the lower potency one all over my body instead. Unfortunately my thicker skin areas were used to the higher one so the response was less than ideal and I ended up still flaring a lot as I did my low potency taper. I gradually phased out using the lower one despite some discomfort because having to use topical steroids over such a large surface area of skin does increase the risk of it being absorbed into the bloodstream, making it more likely to affect my baby.

So in a nutshell I had a fairly quick taper and now am cold turkey off all topical steroids again. The result has been interesting. This winter has dragged on which means I have been starved for vitamin D, more sluggish from being trapped indoors, and cold. Whenever I have a withdrawal, my skin is hotter to the touch because it is acting as an impaired barrier and letting my core temperature heat go. The result? I am a grouchy popsicle of a human.

Luckily, we have finally seen a break in the northeast chill, and I was able to enjoy the weekend basking in the sun and walking for miles. Hopefully getting outside and playing more will help me get my skin back to its old equilibrium before the baby comes.

Nighttime presents its own problems. Though I am less stressed about losing sleep nowadays (having a remote job helps), I do find that physically sleeping is still a trigger. The last few days I have had hives that appear on my back when I am in bed (but not in the same part of my back each day which would have made me think it was my sheets or lotion). I also tend to get heat rash-like symptoms on whatever side of my body I am laying on, or even if I roll over to lay on my back for a bit. I haven’t figured out why that is, but it’s extremely irritating and usually affects my IT band area on my legs the most. And naturally since I am awake weird hours, I notice how my skin dries out as the night goes on (but I am usually too tired to actually get up and re-apply another coat of lotion/moisturizer).

My methods of combatting this withdrawal flare are the following:

keeping calm. I have been extraordinarily unfazed by my skin this time round. I am not worried it will never heal, and I am not worried when I miss sleep (I just try to take more cat naps later on or go to bed the next day at crazily early times like 5pm).

diluted bleach baths. I tend to take one many once every one or two weeks just to make sure I keep the potential infections at bay. I usually know when I have had bad scratching bouts or see signs of what I think may be early infections, and I decide when to do these baths by those feelings.

sugar reduction. Yes, despite being a sugar-lover, I am trying to cut down on added sugars. I don’t even put sugar in my oatmeal anymore (instead I cut up a fresh green apple into it or add berries if I have them). I let myself have one treat on Saturday and Sunday, but I make it so I have to work for it (like walk 2 miles to get the treat, then walk back).

finding a good product for the skin presentation. Lately I’m hooked on Exederm’s daily care moisturizer. It doesn’t stop me from still drying out and flaking but it also usually doesn’t burn or cause excessive itching (except sometimes at night, but my skin is an unpredictable animal at night).

living the “motion is lotion” motto. I have been trying to increase my NEAT (non-exercise activity thermogenesis) meaning I have been trying to reduce the time I am a sedentary lump. The warming weather is helping (I will happily walk anywhere in my town even if it is a 1-3 mile walk one way), and I have been doing a 100 push-up challenge every night before bed (I do modified pushups as my belly has been getting bigger!). I also started incorporating more hip workouts and squats/lunges to keep my legs in shape as this baby grows. All in all, “I like to move it, move it”.

showers first thing. When I get up from bed (which sometimes is a struggle in itself), I get into the shower to start my day. One, I find it therapeutic, the feeling of water. Two, it helps me soften the skin and wash off some of the dead skin so that the lotion/moisturizer can be better absorbed. Three, it bases me in a routine.

All in all I feel like I am handling this withdrawal much better than previous ones. My skin has more or less remained skin-colored this time (instead of reddening everywhere). I’ll give updates if it starts to subside or if it gets worse in time.

Oh and here is a photo of what I mean when I say I have elephant skin (this is my right knee):

As the science of skin (dermatology) progressed, more information was understood about what this large organ is made of, how it works, and how to keep it healthy.

I won’t go into the skin anatomy today but one thing that was more or less universally accepted was: dry skin = bad skin. So in practice this meant that doctors prescribed patients to take baths and let our skin absorb lots of water and then get out, lightly pat dry, and apply the topical medication. An NEA webinar mentioned you need to get the topical medication on within 3 minutes of getting out of the water, which for a full grown adult with eczema over the entire body, proves to be a bit of a challenge.

So now let’s go more into the specifics about topical medications, let’s start with steroids. Topical steroids come in 7 classes: from Super Potent to Least Potent. A high potency topical steroid is one we’d put on our hands/feet/wrist/ankles or the areas that are more likely to have excessive thickening. A mid-strength topical steroid may be safer for the whole body but only for a 3–5 days for thin skin areas (around the eyes, mouth, genital areas). A low potency topical steroid includes the things you can get over the counter like hydrocortisone (1%).

A useful fact to keep in mind is you should know the name of the steroid you will/are using as well as the concentration (listed as a percentage). When in doubt, it doesn’t hurt to google up your specific steroid to see what strength it is if you are not sure, or ask your doctor.

Now for the more recent developments in the eczema world: the non-steroidal anti-inflammatory medications (like Protopic and Elidel). Both are types of topical calcineurin-inhibitors (TCIs), which is a big term that just means they block T cells and stop the too much cytosine (a protein that can cause redness, inflammation, and itching) from being released. TCIs are great because they help the skin without decreasing the amount of healthy cells, and without going as deeply into the skin layers (unlike topical steroids, which cause thinning of the skin if used for a long time).

Protopic is usually stronger than Elidel, but both are often seen as medications to be used after you’ve finished the course of a mid-strength topical steroid, the reason being is that the TCIs can be used for longer periods of time. They are said to be safe to use around those thin-skinned areas, but that they generally don’t work on lichenified (or thickened) skin.

An even newer development was Eucrisa. This is a non-steroidal topical ointment that works by blocking an enzyme called phosphodiesterase (which is increased in immune cells of people with eczema), which then also blocks out the production of excessive cytokines. More research is still to come, but Eucrisa seems to be another promising non-steroidal option.

Lastly, let’s talk about topical corticosteroid (TCS) withdrawal (also known as topical steroid withdrawal or TSW). The health community is still hotly torn on this issue. On the one hand, in 2015 it was stated that the TCS withdrawal is a potential adverse effect of prolonged use of topical steroids, though it was said to be a rare occurrence with not a lot of evidence backing it, and that it was probably caused by topical steroids being used incorrectly. To be honest though, it seems it would be difficult not to have misused topical steroids in the past as the research behind how much to use and how often has changed over the years.

An interesting blog post I came across talked about how much cortisol a healthy body can normally produce, and how the commonly prescribed topical corticosteroids measure up. His analysis was that the potency of prescription steroids are often so much higher than what our bodies could naturally produce, which might explain why it seems so much more common to hear about people’s skins getting addicted. He was testing out how using very low potencies and/or low doses to mirror how much cortisol our bodies could normally produce, and see if that helped him maintain his skin throughout the winter.

Also food for thought, we know that studies are incredibly expensive to fund, and so to get a lot of evidence backing up TCS withdrawal or RSS, there would need to be big companies supporting the research. However, if these studies could then have results that jeopardize major supporters (like a pharmaceutical company), it becomes less likely any such companies will want to fund said studies. I’d bet it will be a while before we get a lot of evidence around more specifics of TCS withdrawal/RSS.

As one of many people who sees a dermatologist for some kind of reoccurring eczema or atopic dermatitis (AD) and as someone who has cycled through the what feels like all options for treatment (often never finding that perfect product, the lifestyle management, or that patient-doctor connection), and as someone always searching to get to my dream skin, I am always hunting for ways to build a relationship with my future Dr. Right.

The most important part of having a good working relationship with your dermatologist is being able to speak your concerns. I have gotten to a point in my life where, when meeting a new dermatologist, I throw out my entire skin background in a verbal paragraph; the goal being to test the waters of this new budding relationship. Here are some examples below for personal context:

I have had topical steroid withdrawal (TSW) before because of my excessive use of steroidal topical ointments in my earlier years, and I am somewhat hesistant to use them now. I am also not entirely interested in oral steroids again, because of their shopping list of side effects. It is important to speak your fears of strong medications, so your derm knows what you need to discuss.

I have been using coconut oil on my skin and have had no problems with it except that it didn’t prevent a flare. This bit of information is shared because it’s true (and you never know when new research will come out saying that coconut oil is not as good as we thought it was… e.g. what happened with olive oil) but it also can be used to get the derm’s opinion on natural products/non-dermatologically created alternatives.

I have been avoiding gluten and soy (because they are common allergens and because I have other legume allergies) for a while and worry that me starting to eat them again this summer may be part of the reason for my flare. This is brought up to bridge into the field of nutrition to figure out my new derm’s opinions on diet in regards to its effect on eczema and management.

I know about the current new drugs on the market (Dupixent) and wonder about its effect on pre/peri/post natal women. It’s crucial to remember to bring up reproduction-related information if you are going to start a drug that hasn’t been tested on men or women for reproductive side effects, if you are interested in having children one day.

What is the plan for me and what will my management entail going forward? After all, I want to know she isn’t just going to prescribe me a crap ton of drugs and wish me the best with my life… continuity of care is extremely important for preventative care and management.

In the case with AD, I was hesitant about both topical and oral steroids as the major component of my management, and my derm was receptive to my initial hesitation. However, she also argued with the need for inflammation management, because in an untreated state, chronic inflammation will damage other organs and systems in time. So she walked me through the details about what she was thinking for both types of steroids- the dosages planned and how long she planned to keep me on them. If you are confused about what the drugs do or their safety, it doesn’t hurt to inquire more (for example 60mg of prednisone is on the high end of how much doctors will prescribe).

My derm told me of her roadmap for my management (an important thing you want your dermatologist to bring up!)- how long she’d want me on the oral steroids, which topical steroid was for my face versus which for the rest of my body, how we’d cycle through a 2-week steroidal/1-week non-steroidal topical cycle, and the need for more frequent bleach baths to prevent staph infections from other healthy-skinned people (because everyone carries some level of staph on their skin).

When I asked her my big question — what can I do to prevent these flares from coming back aggressively again, she also brought up diet changes, as well planning future appointments to monitor how the preventative measurements were going. All in all I left with a sense of her being committed to making sure things worked, not just prescribing me all the meds I could carry and hoping I didn’t ever need to come back.

The big takeaway from being a frequent flyer of the dermatology world is that it is okay to need to find a dermatologist who fits with you. You want someone you feel comfortable with, who you can talk to openly and feel like they both have the time to listen and are receptive to your ideas and where you are in your health literacy (i.e. do you like written or oral directions, how familiar are you with the drugs/treatments/interventions, how much you feel you understand or care to understand about the condition as a whole, how it works genetically, immunologically, neurologically, etc).

You should feel like you are leaving with enough information to get you by AND also with your questions answered, but also that you know what to expect and when to reconnect with the derm in the event that something isn’t working just right. You don’t want to feel like you’ve heard it all before, or that there is something the derm just isn’t getting about you. The relationship needs to be out on the table and the communication level high. If you have persistent remaining questions- ask them! If you are frustrated by something, voice it!

With any chronic disease, management relies on the ability to be able to communicate your feelings and symptoms, and on the ability of the provider to be able to give you the support and care contingency to make sure that you don’t falls through the cracks in the system. So when working to develop a fruitful and useful relationship with your dermatologist, don’t be afraid to be a bit selective and work through difficult questions to see if you have found your Dr. Right.

Here’s a photo of my own hands October 2016 (left) and March 2017 (right):